ANA Discussion Forum
Archive => Archives => Topic started by: msuscottie on August 25, 2006, 07:15:21 am
-
I've had a few request for this, so I thought I'd just post it here ...
http://msuscottie.com/Documents/AN.doc
-
Thanks for sharing your story. It's good to read about how other people felt as they jouneyed through this acoustic neuroma path. I can certainly understand wanting to get out of the hospital. The care there is excellent, but I don't want to go back.
I like your name msuscottie. We just left our daughter there two days ago. I've always been partial to MSU because I was born there while my dad was in college.
Jean
-
MSU is a great school. Academically & socially. I'm sure your daughter will love it!
-
Scott - thank you so much for sharing your story! It sounds like you had a very long journey that is not yet complete and I wish you well with what is to come. I think it was a wonderful thing for you to put your thoughts and fears down on paper. 1 - because you always feel better once you write things down on paper and 2 - your 4 month old will be able to look back on what you have written and know just how strong and brave their father it! You are a great source of inspiration, not just for us here in the forum, but for your children and family alike!
Laura
-
Scott,
Thanks for sharing your journal with us. I, also, had my surgery at Providence but my time in the hospital was much less intense and traumatic than yours. I could relate to the roommate issue. Mine had visitors all day and at night was constantly calling the nursing staff into the room. Each time they came in, the light would be turned on -- the overhead light -- disturbing my sleep. I couldn't wait to get home and sleep, sleep in the dark! You are an inspiration of determination for the rest of us.
Dee
-
Thanks for the kind words everyone. I've been meaning to chronical my second surgery, which went much smoother, but I haven't gotten around to it. I'm sure it'll be much shorter than the attached book. ;) At the time I wrote this, I just kind of felt like no one had any clue what I had just been through, that's about the same time I found this forum. You have all been great friends to me over the past few years. I only hope to be able to give back to you the support you've given to me. We're a very unique group of people in here, it's nice that we take advantage and learn from each others experiences. I'm working on a little project right now that might help connect people on the web with similar health challenges the way we've all been connected. I'll try to give you all more details later today, but I just felt like I had to do my part. Anyway, thanks again for reading.
-
Thanks for sharing your story ye scallywag--I love good writing.  Ain't it disconcerting to say the least  to be a "normal" runnin'-around-doin'-everything- person and WHAP overnight turn into somebody COMPLETELY different? But ain't it great to be alive and enjoy your family and friends and the lil bundle of joy ? A lot of brain injured prople don't even know who they are. We're the lucky ones. Not lucky to get a brain tumor, but lucky to survive one with mostly minimal aftereffects.
Capt Deb 8)
-
Very true, in a VERY weird way, we're all lucky.
-
Scottie:
Thanks for the excellent recounting of your 'AN Experience' - and thanks for omitting the medical jargon that we are all pretty familiar with but which too often makes reading other's AN stories difficult, as we are patients, not physicians. Your story is written in a very clear style and in some parts, for me, was very easy to relate to, even though I have not experienced the same post-op complications. Walking into the hospital at some ridiculous hour (I went in at 5:30 AM) 'whole' (pre-surgery) and knowing they are going to cut into your brain - and, worse yet, NOT knowing exactly how that will turn out for you, even though the AN has to be removed, no question, is, easily, as intimidating as you relate. It was for me, and I totally trusted my surgical team.
Realizing the value of friends and family is another thing I'm certain we can all relate to in some manner. Like you, just having my wife either next to my bed or near me while I was in the ICU was very comforting. From the time I checked in for my surgery until I finally was moved to a 'regular' room (for about 18 hours before discharge), my wife never left the hospital, sleeping in a nurses lounge area overnight. She never once complained and she simply told the nurses (that kept urging her to go home) that she had no intention of leaving the man she had been married to fo 36 years when he was in ICU following brain surgery. They eventually stopped trying to get her to leave, as it was obviously futile. Fortunately, I had almost no complications and came out of surgery in very good shape, considering my age (63) and lack of prior physical conditioning, although I was otherwise healthy with none of the usual physical conditions such as heart, diabetes, joint or back problems, etc that are all-too common to folks my age. My neurosurgeon was amazed and delighted with my rapid post-op progress. He still is, almost 12 weeks later.
Like you, Scottie, even with only 5 full days spent in the hospital, I always longed for home, my recliner and my own bed (with my wife in it). Also like you and every other AN patient, I wanted very much to be 'normal' again. That was my motivation for religiously doing all the balance exercises and resting (as needed) the first few weeks at home. After 4 weeks, my neurosurgeon gave me the O.K. to drive again, and within six weeks I was pretty well back to normal, with just a few restrictions, such as avoiding heavy lifting. I'm retired, so returning to work was not an issue and my only child is an adult son (27) who lives at home and needs nothing from me except occasional good advice, which he usually ignores.
My wife was a bit over-protective at first but I explained to her (after my first few weeks post-op) that I actually wanted to do all the mundane little things I used to do, like take out the garbage, etc. and that having her now do those things made me feel useless. She understood and immediately stopped doing all my former household chores which I resumed taking care of, something I very much needed and wanted to do. My stamina isn't what it once was but otherwise, I'm good. I lost my hearing in my left ear (the 'AN side') some years ago, so I've adjusted to that handicap. I feel great and am told quite frequently how 'good' I look, probably as opposed to looking dead, which is what most people assume will happen to you when they learn that you have a BRAIN TUMOR.
Having an AN and subsequent removal surgery does strengthen one's spiritual faith (it did for me, anyway) and certainly makes you appreciate life and re-set priorities, as you learned - and as we all learn. 'Benign' tumor or not, having an Acoustic Neuroma definitely is a life-altering event. Thanks again for your moving, informative personal account of how it affected yours.
Jim
-
Thank you for the kind words Jim and for sharing your experience. I love to hear other people's "stories."
-
Hey Scott!
Thanks for the story, it was actually a very interesting and entertaining read! I'm glad to hear your second surgery went smoother, the first one certainly sounded like hell. Its' really something how you discovered your AN...I have Dr's all the time tell me they're surprised I found mine (I insisted on a mri after facial tingling) but your story is truely amazing!
best regards, melinda
-
Scotty,
Read just a little. Have to go out right now. Looking foward to finishing it later tonight.........I'm already on the edge of my seat!!
Paul
-
Scott: just read your story and thanks. I wonder if your wife has a story from her view of it all. I am the wife of an AN'r and I think sometimes there is another story from the family watching from the sidelines. It has sure been an adventure, to say the least. I wish you well, we lived in Livonia, Mi for about 16 yrs, really liked the change of seasons. Best Wishes Jeanie ( the other half of KenJen)
-
Thanks, Scott, for your story. I can relate to several parts of it. Like the difference that just seeing family members and friends makes when one is 'incarcerated.' I've often wondered why so often in our culture here in the US people are encouraged to go home rather than stay by those in hospital. In both Italy and Greece it is entirely normal and expected that family stays close by.
thanks again for your well written post.
Peanut
-
Scotty,
Wow, I had no idea. And I'm just dizzy! But you're young and strong have a wonderful wife and baby (ies)? and lived through it. A huge feat in itself.
Glad you posted it. Makes me (almost) glad I did have the surgery. Your tumor was huge. Oy.
Nan
-
Scott,
I really appreciate you sharing your story. Thank You
-
Of course, If it helps anyone, it's worth the time it took to write :)
-
Scott,
I think its really great what your doing for all of us.
You have been through a lot, and have come out with a great attitude, to share
your experience and your compassion with others.
My hat is off to you, you are using you trial to increase your growth as an individual and that
is a gift.
T
-
That's so nice of you to say, thank you.